Virtual peer support programme for carers of MND

UK Chief Investigator

Louise Rose

Research summary

Providing care as a family member or friend of a person with motor neurone disease is challenging and may negatively impact the caregiver’s wellbeing. This negative impact can increase as the person’s disease progresses to needing support for feeding and breathing. Unfortunately, at present there are no studies identifying effective strategies to support these caregivers.

Peer support, an organised form of support provided by and for people with similar conditions, problems or experiences, is a strategy shown to help caregivers of people with conditions such as dementia. Peer support can be in-person; however, this may create problems for people with high caregiving demands, or social or living conditions preventing participation. Virtual peer support is more accessible and may be better than in-person peer support delivery. However, there are no studies confirming benefits of virtual peer support for informal caregivers of people with motor neurone disease at risk of or needing breathing or feeding support. Our study proposes to address this gap.

We will test if a 12-week virtual peer support programme developed by our team can improve caregivers’ mood and being able to manage and cope with their caregiving situation. The programme allows people to chat using text, audio, or video connections with a weekly group chat and discussion boards. We will recruit informal caregivers from clinics, services and organisations providing care or support to people with motor neurone disease. We will use a research method that enables all people that agree to the study, the chance to be in the programme. However, half of those that agree will only receive usual supports so we can compare their mood, burden and coping skills with people receiving the programme. We will ask people how they liked the programme and study which features are used and how often. 

Current status

Active – recruiting

Recruitment target

• 154 participants

Click here to see how many participants have been recruited into this study to date (external link to the NIHR public study search) 

Recruitment groups

Informal caregivers of an individual with MND.

Locations

• Guys & St Thomas' NHS Hospital Trust Site open for recruitment out-of-area (participants can self-refer, see the recruitment flyer at the top of this page)

• Dundee Site open for local recruitment only

Participant identification centres (PICs):

• Brighton

• Dundee

• LOROS Hospice, Leicester

• Stoke

Information about study sites

Key dates

Recruitment open date: 7th June 2022

Planned recruitment end date: 31 October 2025

Participant information sheet

Participant information sheet  (PDF, 183KB)

Inclusion / exclusion criteria

Inclusion criteria

1. Age > = 18 years;

2. Family/informal caregiver of an individual with MND living at home who is being considered for or receiving any of the following (i.e., entering King’s clinical staging Stage 4A: nutritional support; or Stage 4B: respiratory support) (a) assisted ventilation (b) cough assist (c) gastroscopy and enteral feeding

3. Able to speak/read English; 

4. Has access to a computer, tablet, or smartphone and the internet; and 

5. Consents to participation (Note: in situations of social deprivation (i.e., no access to smartphone, tablet, computer and/or the internet) we will be able to lend a 4G enabled Android tablet).

NOTE: Caregivers may continue participation based on their own preference in the study if their family/informal member dies during the 12-week intervention. We will ask participants to notify both their mentor and the research team in this event. These participants will have usual access to bereavement supports available to them.

Exclusion criteria

Receiving active psychiatric/psychologist care identified through self-report prior to consent. Participation in other research is not an exclusion but will be assessed by the CI/research team for appropriateness.

Sponsor

King's College London

Study design

Interventional

Intervention

• Prevention

• Education or Self-Management

• Psychological & Behavioural

Outcome measures

1. Hospital Anxiety and Depression Scale (HADS);

2. Positive and Negative Affect Schedule;

3. Zarit Burden Interview;

4. Pearlin Mastery Scale;

5. Personal Gain Scale;

6. Brief COPE.